Wednesday, April 28, 2010

Chrissie's chest is closed up now.

Dr. Kupferschmid reported that there was A LOT of bleeding within her entire chest cavity, which is most likely a result of the TPA drug that breaks up clots. (The drug that works like Liquid Plumber that I said has significant risk, especially if it seeped past the original clot and into the chest cavity, which it appears to have done.) The benefits of using TPA during Chrissie's episode of SVCS (when she was "inflating" like a balloon and turning purple because the blue blood was building up in her upper torso and head...NOT good) yesterday definitely outweighed the risks. It was a life or death situation, and the best (least invasive) first response to clear the clot causing the SVCS was to give TPA a try. God and the use of the TPA ended up doing the miraculous and saving Chrissie's life.

However, as I said, TPA had significant risk, and at 4AM today, we saw the risks coming to fruition.

They turned Chrissie's PICU room into an OR and opened her up to discover tons of bleeding, so it was clearly the right choice to open her back up. They washed out the chest cavity and got out as much of the pooling blood as possible, then they put glue everywhere they could to try to stop the bleeding/oozing, but with TPA, it's hard to get it to stop because the blood isn't able to clot at all on it, plus Chrissie is being given other less potent drugs to keep her blood from clotting so that she can be on the ECMO machine, which is necessary to keep her alive.

Dr. K is noticing a few other signs of things going south as a result of being on ECMO for so long. (It's OK to be on ECMO for longer if it's just supporting the lungs, but with it supporting the heart and lungs on this rescue unit, there are other issues that can occur within the body.) Chrissie has some areas on her left foot that are signs of "emboli" (sp?) where clots go to the extremities, and while I haven't researched any of this, it told Dr. K that Chrissie really needs to get off of the ECMO machine as soon as possible.

His desire today is to be as aggressive as possible in weaning Chrissie from the ECMO machine and seeing if her heart is strong enough to sustain her on its own. This is HUGE, but Dr. K feels like we need to move quickly and aggressively to get Chrissie off the machine. It's being referred to as a "mega wean" from the ECMO. We don't know the time frame as it's dependent upon how Chrissie's heart and lungs do as they continue to turn the machine down.

So, the prayer requests for today are (in addition to anything else God lays on your heart for our family):

That Chrissie would stop bleeding internally, but not clot so much that it clogs the ECMO or drainage tubes...a delicate balance to achieve.

That Chrissie's heart would be strong and "perfect". That it would beat and pump properly, that blood would flow through it properly, that it would do the proper exchange of blood from left to right without improper exchange of red/blue blood, that it would push the correct blood out of the new pulmonary artery and out through the new valves and into the lungs. Basically that Chrissie's broken heart would be completely, wholly, and miraculously healed, every nook and cranny, every chamber, every function, inside and out.

That Chrissie's entire pulmonary system would be completely restored to perfection. That all of her arteries, veins, and vessels would be able to handle the new pressures of blood running through them, and that they'd be able to get the blood delivered to the lungs properly.

That Chrissie's lungs would accept the blood being delivered by Chrissie's heart and pulmonary system. That her lungs would clear and inflate. (Right now she still has areas that are collapsed within her lungs, and one of those collapsed areas is at the top of one of her lungs, where blood needs to enter the lung, making it really difficult for blood to enter a collapsed cavity.)

Lungs are a huge prayer request because if her heart is able to function properly on its own, the lungs HAVE to clear up and function properly as well. Lungs are not clear right now.

That Chrissie's entire pulmonary system would function beautifully, miraculously, and perfectly. That Chrissie's blood would be properly treated by her own pulmonary system. That the carbon dioxide gasses would be removed as they should and that her blood would be properly oxygenated by her own pulmonary system, as God intended it, all at the proper life-sustaining and vital levels.

That Chrissie would be able to get off the ECMO machine and LIVE!!!

My dearest Chrissie, we are so madly in love with you, our precious warrior princess. I've never met a girl as strong and brave as you, my sweet love. I weep as I look at your helpless body that is swollen and hurting with tubes coming out in all kinds of areas, looking at tubes sewn into your skin, protruding from your tender neck, and I wish that I were the one on the hospital bed in this room. But God quickly reminds me that if it were me, I wouldn't still be alive because I am not as strong as you are, baby girl. You are a much braver, stronger, and tough girl than your mommy is, and I cannot even begin to tell you how proud of you I am. I know I would have given up a long time ago. I know how badly you want to come back to your mommy and daddy who you love so much. I know how much you want to boa constrict our necks and proclaim to the world that we are YOUR mommy and daddy, no one else's. I know how much you want to put your head under the bathtub water with your big brother Sawyer with those cute pink goggles on your precious face while your chubby sweet cheeks protrude as you look at us with glee, splashing in the tub. I know how much you want to blow out 5 candles on your birthday cake this year on October 8. I know how you could tell the world the day of your birthday as you so looked forward to that day, and we so looked forward to seeing you fill your lungs with enough air to blow out the 5 candles on your cake. We are so proud of you for being able to blow out 1 of the candles at your princess party the night before your open-heart surgery, but we do not give up hope that you WILL blow out 5 candles in October, and we'll throw you a HUGE welcome home party with as many candles as your heart desires as soon as you come home, baby girl! I know how much you want to play chase with Kiefer without getting winded, how you want to jump on the trampoline with Parkey without having to be held, how much you want to race on your scooter with Sawyer without him having to push you, how much you want to take a walk with Meribeth instead of having to be pushed in the stroller, how much you want to sing and dance with Mattie without her having to hold you on her hip and sing and dance for you. I know how much you want to play Hide and Seek with Emily and Stephanie Hall, the kind where you can actually run when they discover you and squeal with delight without us having to tell you to rest. Baby girl, you're stronger than you know. You're the strongest girl I've ever met. You have more courage than the entire world put together. I wish that you didn't have to endure all that you're going through, my precious angel, and I wish that there was something I could do to alleviate your pain and frustration. If there's one thing I am sure of, my love, it's that God is with you and Jesus is holding your hand through this trial, and our Father's love for you is greater than mine. I don't see how that's possible, but I know it without a doubt. None of this makes sense to our measly minds, but God is sovereign, baby girl, and He has a mighty plan in all of this. Sweetheart, your life has brought more people to their knees than we can count. You are a source of light to our hurting world. You are being used to bring hope, help and healing to thousands of people around the world. Most people are not chosen the way God chose you, baby girl. He chose YOU baby girl, ;you are His princess, the daughter of the King of Kings, the cherished one who He choses to show the world His miracles through, and that is a great honor and privilege, although it's not necessarily a fun one. Oh what I would do to be able to take this from you, but the blessing of being chosen is one that I would never want to steal. I wish your gift of being chosen would be a lot less painful and a lot les dramatic, but I hope to hear one day soon from your lips that you had no pain while Jesus' angels played and frolicked with you as you had tea parties and birthday parties and galloped on horses through the fields, having the biggest and most fun party you've ever experienced as the world stayed on their knees, lifting you up to our Father. I pray that you will have no negative memories of all that you've been through physically in this hospital room because you have been the most cherished princess present at God's continuous party in honor of His chosen and beloved CHRISTyn Joy. I know without a doubt that God has you in the palm of His hand, as He strokes your fine light brown hair and has pedicure, manicure and jewelry parties with you while the rest of us pray for you and continue to beg God to restore you to perfect health and to give us the awesome privilege of being your earthly parents who love you more than we can ever express, our precious angel. We want you to come back to Forgotten Saw Ranch with us so that we can remind you of how much we cherish your precious life, and so you can be a reminder to others to take time to play TODAY. Sweet angel, we love you dearly and we ask you to keep battling, our warrior princess. We love you and miss you more than you know. We can't wait to hug your neck and feel your tiny fingers press into our necks with a grip like none other. I'm not ready to say goodbye to you, which is why this letter is rambling in circles, so I'll close with the words you always needed us to say: Mommy and Daddy never leave you, precious angel. We love you forever and always no matter what, sweet love. We are so proud of you. Mommy loves you. Daddy loves you. And now the whole world loves you, too, princess. You are His princess, the daughter of the King of Kings, sweet love, and don't you ever forget that. You are chosen.

Here's a song for you and the rest of the world who is praying for you, sweet love, one that seems to be so true of our reality right now, one that is a reminder to all of us of what's true right now:
Three in the morning,
And I'm still awake,
So I picked up a pen and a page,
And I started writing,
Just what I'd say,
If we were face to face,
I'd tell you just what you mean to me,
I'd tell you these simple truths,

(Chrissie:) Be strong in the Lord and,Never give up hope,You're going to do great things,I already know,God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,(World:) Take your time and pray,
These are the words I would say,

Last time we spoke,
You said you were hurting,
And I felt your pain in my heart,
I want to tell you,
That I keep on praying,
Love will find you where you are,
I know cause I've already been there,
So please hear these simple truths,

(Chrissie:) Be strong in the Lord and,Never give up hope,You're going to do great things,I already know,God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,(World:) Take your time and pray,
These are the words I would say,

From one simple life to another,
I will say,
Come find peace in the Father,

(Chrissie:) Be strong in the Lord and,Never give up hope,You're going to do great things,I already know,God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,(World:) Take your time and pray,Thank God for each day,His love will find a way,These are the words I would say

~These are the Words I Would Say by The Sidewalk Prophets

Princess Chrissie after her Make-A-Wish send-off party in February, 2010.

Typing through many, many tears after reading your post. I can relate to what you are feeling & saying a little too well. My friends & family are praying earnestly that Chrissie will be completely healed & that you will be holding her soon.

What a beautiful letter you wrote to your precious angel, Lorraine... I know she feels her family's love and is comforted by it! I just got back from the hospital b/c my mom's husband had surgery. I was so saddened to hear that Chrissie's chest had to be opened again --BUT... I am NOT losing faith in the Lord that He will perform further miraculous works and healing on Chrissie, that He will stop the excessive bleeding and prevent any dangerous blood clots, that her heart and lungs WILL be restored to healthy functioning! Sweet Chrissie, I can't IMAGINE what you must be thinking--but, I too hope you don't remember ANY of the scary stuff and I pray that you feel NO pain or fear! Dear Lord, guide the medical team's hands and minds, give them wisdom and clarity. Wrap Your loving, HEALING hands around Chrissie O Great Physician and restore her to her family and those that care about her to YOUR Glory! In Jesus Name, Amen!

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Our Ukrainian Additions

These are our new sons! Click their picture to read the story of how God worked miracles to lead us to them while in Ukraine Dec. '11.

Sons of our Heart

These were our Summer '11 host boys who we planned to adopt. God brought us to Ukraine Dec. 2011 to adopt them, but turned the events to lead us to adopt 2 six-year-old boys with Down syndrome! Our host boys now live with their bio aunt, but they'll always be sons in our hearts.

About Lorraine

Hi, I'm Lorraine. I'm just one member of Team Boss Your Heart, but I happen to be the one who keeps up with this little blog God started in December 2009. I'm mom to 13 (3 bio, 10 adopted, 1 in heaven), so I don't devote as much time to updating this blog much anymore--sorry! This is my online diary/scrapbook of sorts, a way to record this journey of large family--special needs--blessed by adoption--ranch living--Jesus loving life. Explore this blog (and BossYourHeart.com) to get to know us, as well as the ministry and testimony God has given us. It's not your typical family testimony, but it's the one He's written for us, and we wouldn't have it any other way.

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